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Autism (Aspergers & me)

FocusZingFocusZing Posts: 4,373
edited November 2017 in The cake stop
Good insightful programme by Chris Packham tonight about dealing with Aspergers.
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  • I had a great Asperger joke

    But you wouldn’t find it funny.
  • Was it like the rory bremner one a year or so ago? Also insightful but covering the same ground I bet.
  • Just watching it now.

    Like Chris I lived without diagnosis into my 40s but whereas he was able to embrace his atypicalness in a neurotuypical world I felt, not knowing any better, I had to conform and fit into a neurotypical that I had no affinity with and which nearly destroyed me on many occassions. Effectively I was in an abusive relationship with life itself.

    I work with many people diagnosed with Aspergers and whilst beyond the diagnostic descriptors I feel little commonality with these people there are many things that Chris has said that ring true with me and have raised a knowing smile.
  • crescentcrescent Posts: 1,102
    I think many of us can identify with some traits of the autism spectrum. My son has a diagnosis and, having found out so much about it over the last ten years or so, I strongly suspect that I would fit in there somewhere as well. I thought the American clinic where they were trying to "cure" it was quite brutal. Chris Packham came across as an incredibly articulate and intelligent guy, I thought.
    Ribble Gran Fondo
    Bianchi Impulso
    BMC Teammachine

    “When I see an adult on a bicycle, I do not despair for the future of the human race. “ ~H.G. Wells
    Edit - "Unless it's a BMX"
  • One of the bones of contention I have with people self-identifying with traits within the autistic spectrum is unless that's followed up with an assessment by a clinical professional and how that identification fits into the Triad of Impairments then anyone can give themselves the label of having Asperegers without any real evidence.

    My brother has done this with one of his sons because it gives them a satisfactory answer for some of his behaviours but without the hassle of a proper diagnosis. At the other end of the spectrum (no pun intended) it's also not uncommon for families to demand a diagnosis for their children as an aid to getting extra educational support.

    By comparison, there are an identified set of traits defining psychopaths, among which we may all find some that we could identify with but you don't hear people rushing to identify themselves as psychopaths simply because they identify themselves with a few traits.
  • oxomanoxoman Posts: 10,456
    I have a grandson and granddaughter both with autism and whilst challenging at times I love them to bits, sadly when things do go pear shaped other people are quick to judge incorrectly. Hopefully one day people will understand.
    Too many bikes according to Mrs O.
  • awaveyawavey Posts: 2,368
    I havent seen it yet,will watch it on catch up, but I do know alot of people confuse traits of introversion as autism, because there are overlaps in behaviour in social situations that may seem to be the same thing, but they do have very different causes and of course some people on the spectrum are themselves introverts as well, so it can be confusing.
  • crescentcrescent Posts: 1,102
    At the other end of the spectrum (no pun intended) it's also not uncommon for families to demand a diagnosis for their children as an aid to getting extra educational support.

    We were quite the opposite and did not pursue a diagnosis: my son was originally assessed due to late speech development and the diagnosis of Asperger's was given because it seemed to be "closest" to his particular condition - this was over a period of a couple of years. I personally believe he has another spectrum condition called Semantic Pragmatic Disorder which tends to affect language and misreading of social cues etc and which tends to improve with maturity. I was annoyed at his diagnosis of Asperger's because I felt it was just a label that let them draw a line under his case. However, because of his diagnosis, he did get extra resources throughout school which he needed so he would not have had access to these without it.
    Ribble Gran Fondo
    Bianchi Impulso
    BMC Teammachine

    “When I see an adult on a bicycle, I do not despair for the future of the human race. “ ~H.G. Wells
    Edit - "Unless it's a BMX"
  • There's some overlap in attitudes to diagnosis in ADHD and ASD I reckon. By this I mean there's only good funding for diagnosis and support in children but it's still a battle, parents can assume their child has one thing (adults too about themselves) with the result they push for that diagnosis and you can get mis-diagnoses because it's easier to have a nice neat tick in the ASD or ADHD box. There's a neater system in place for those diagnoses in children.

    Of course there's still a generation alive who were adults before ADHD and ASD got widely accepted. They've struggled through life with unfair labels attached to them. Then when as an adult they look into matters themselves they hit a brick wall with getting a diagnosis. It's getting better in terms of GPs starting to accept the idea that there are adults who missed being diagnosed as a child probably due to their profession and teachers not knowing about it when they were children. Gone are the days of GPs saying it's not ADHD/ASD because you weren't diagnosed as a kid.

    The biggest trouble I see is the poor resources across the country to get diagnosed if you are an adult. Unless you can go private (I heard it's thousands of pounds to get a full diagnosis) you could be years before you get to the point of diagnosis and treatment. Many I suspect give up or accept the NHS anxiety / depression services you get gobbled off with.

    I've not watched this programme because it seems too similar in premise to the Rory Bremner one a few months back. I might have to watch it if he got diagnosed as an adult and it goes into the difficulties of getting one. Diagnosis was an issue to a family member who just gave up on it in the end. Two doctors specializing in adult diagnosis of ADHD, London and up in Scotland. IIRC the London one went private only years back. Other than that it's general mental health provision which is really focused on anxiety and depression. Anything else they try to convince the patient it's depression. Nice, easy drug regime that often does nothing for them.

    Sorry rant over. Mental health isn't handled well by the NHS unless it's certain conditions I reckon.
  • webboowebboo Posts: 4,260
    Coming from the other side having worked in mental health. Lots of people push for a diagnosis in some cases to excuse their behaviour for example if you have a diagnosis of bipolar or Aspergers it excuses your behaviour as you can't help it.You see this in families where a child is out of control, a diagnosis is sort for this rather than looking at the possibility of dysfunctional parenting.
    Hence as mentioned above you never see someone self diagnosing that they have an emotionally unstable personality disorder etc as with personality disorders including psycopathic ones you are deemed responsible for your behaviour.
  • keef66keef66 Posts: 13,123
    I saw the Rory Bremner one recently, and heard the Chris Packham one the night before last (I only saw snippets because I had my head in the fireplace grouting the new hearth). Thought provoking stuff, and kudos to them for talking about it so honestly. I got the impression that neither of them would be interested in being 'fixed', and recognised that their conditions had likely helped them in their respective careers. I got the feeling they both had developed coping mechanisms and seemed content with their lives. The Americans convinced Aspergers could be cured were particularly scary.
  • timothywtimothyw Posts: 2,482
    I haven't watched the program so this might be a stupid question, but what would an adult hope to achieve from diagnosis with Aspergers/high functioning autism etc? Assuming that they are a 'functional' member of society (such as Chris Packham or Rory Bremner...)

    Obviously it would be nice to have the recognition of what makes you different but I'm not aware of any treatment being necessary or appropriate?
  • rick_chaseyrick_chasey Posts: 60,998 Lives Here
    TimothyW wrote:
    Obviously it would be nice to have the recognition of what makes you different ?

    Bit more than that.

    FWIW, on a much more mild scale, I was diagnoses as being heavily dyslexic in my 2nd year at Uni. It is a peculiar and uncommon type of dyslexia too, so the signs weren't so obvious (though very pronounced in other ways).

    Really helped me understand why I did things in weird ways; to overcome the dyslexia. By that point I'd created all my own coping strategies, so it was an irrelevance to find out then from an education perspective.

    We're always learning however, and I've been much more confident in having grown up conversations with bosses around how to get the best out of me for certain tasks that are affected by dyslexia; it's often counter-intuitive.

    I can only imagine how, for something more severe, such as Asperger's, how much confidence and ease that can bring.
  • TimothyW wrote:
    I haven't watched the program so this might be a stupid question, but what would an adult hope to achieve from diagnosis with Aspergers/high functioning autism etc? Assuming that they are a 'functional' member of society (such as Chris Packham or Rory Bremner...)
    Fundamentally a diagnosis can give you an explanation, understanding, peace of mind, a sense of contentment and possibly the opportunity of happiness. Unless you understand how it feels to live in a world where you never feel you belong and can unknowingly be discriminated against for being yourself then you'll never understand what it means to be given something as fundamental a sense of purpose or who you are, something that that person may have never felt before in their life.

    The problem is the vast majority of adults with Aspergers aren't functioning members of society but are hidden away out of sight and, as with anyone with a condition affecting the mind, just because you don't see them doesn't mean they don't exist. Chris makes a point in the programme of the unemployment rate among adults with Aspergers (was it ~90%?) which is an appalling figure and indicates that on this one aspect that we see as important to a meaningful life society is letting these people down.
    Obviously it would be nice to have the recognition of what makes you different but I'm not aware of any treatment being necessary or appropriate?
    There is no treatment because it's not an illness. The problem is society is letting down a group of people already disenfranchised and easy to ignore.
  • I know it's not the same but I see some of the benefits of diagnosis for ASD as similar to the benefits for diagnosis of ADHD.

    If you're an adult and you're functioning then what is the point? The point is you get understanding and peace of mind. If that's not enough even high functioning ppl might find it what they can achieve with help. With ADHD there's more than drugs to help you CBT is one option plus other talking therapies.

    The main point is you one you're different but getting an ADHD diagnosis explains that difference. Like ASD you have several characteristics that you can be high or low functioning on it any place in between. With diagnosis you will get placed on those characteristics and if nothing else it leads to an explanation of your difference.

    I've read of highly successful academics retiring as professors in good institutions then getting a diagnosis of ADHD. What's the point? They've finished their career. Having read the comments (on a forum for ADHD) there's an immensely positive effect on that person with the diagnosis.

    BTW with ADHD you can be functioning in society but hugely underperforming. Imagine Albert Einstein flipping burgers! That could easily be what an ADHD person is doing to get by. Or going from job to job because they can't function for long in any job. Diagnosis can get someone's potential back.

    Now I know some ADHD ppl with ASD too. They're different but there's similarities in how they're perceived and how they limit achievement I reckon. There's also benefits too. Chris Packham has succeeded possibly because of them, rory bremner too. For example with ADHD it's been said that in disasters or accidents it's often those with the condition reacting quicker than NTs. The idea that their life is already chaos so the sudden chaos of a disaster is normal to them so they're the ones getting help to where it's needed. I don't know how true but I do know of diagnosed ADHD people who may don't get flustered when things go wrong. They act normal and just carry on.

    Then the last thing about diagnosis is how you get to know about things being part of the disorder that you had no idea could be. You're not lazy, stupid, forgetful, clumsy, weird but that's part of your ADHD. I've forgotten a lot of the things covered within ADHD but there were two things that struck me most because they just seemed like personality traits/weaknesses.

    Anyway ADHD isn't ASD but I feel there's enough similarities for me to post about it in this thread. It's all about awareness afterall. The more ppl are aware of things like autism or ADHD the better.
  • PS there's no treatment just perhaps help in coping. That's possibly good enough.
  • navrig2navrig2 Posts: 1,704
    What channel was this on?

    My missus works in an AEN department and many of the kids are autistic and have profound problems. She will be interested in seeing this if available on catch up.
  • navrig2navrig2 Posts: 1,704
    Watched this last night.

    Very interesting and matches in with some of the experiences of a son's friend who is also Aspergers. This lad had similar issues at school but has done very well through University and is now working in his chosen field.

    Thanks for highlighting it.
  • earthearth Posts: 934
    I've always suspected a lot of religious people are far over on the autism/aspergers scale. I think it must be past experience of vicars and the likes with really odd accents and pronunciations.
  • earth wrote:
    I've always suspected a lot of religious people are far over on the autism/aspergers scale. I think it must be past experience of vicars and the likes with really odd accents and pronunciations.
    As I've said before, cherry picking traits - and odd accents and pronunciations aren't traits specific if at all relevant to diagnostic traits for Aspergers - that people feel fit a condition isn't how diagnosis works. If someone is seeking a diagnosis then you have to look at all stages of their life, particularly the early developmental stage, and not just cast a subjective eye over what they're doing or how they look in the here and now.

    Whilst there may be some people with Aspergers working in roles such as vicars off the top of my head I can think of numerous reasons why it would be way down the list of suitable employment; religion doesn't deal in absolutes and may not stand up to analysis by a logical mind, parishioners and others may challenge a person's faith teachings, you have to be always available to parashioners, congregations can cause sensory overload, the challenge to show compassion and empathy, to name but a few.

    I'm like Chris Packham in that, to all intents and purposes, I appear 'normal' and am able to function in the world with other people (I do lots of interviewing, some teaching, speaking and chairing conferences) but it's not the real me, it's a performance. The real me, Like Chris, is someone who prefers to live in isolation, both physically and mentally, for weeks on end away from other people as other people aren't significant to my life and that has been true throughout my life.

    So if you suspect someone of having Aspergers cherry picking traits that you feel fit isn't the way to go. You would need to speak to them about the full spectrum of traits, particularly how they relate to their early development and apply that to the triad of impairments which, unless you know that person personally, would be extraordinarily invasive and impolite thing to do.
  • Religious types and religious leaders such as vicar aren't the same thing necessarily. One is a group of ppl with a belief the other is a sub set who've made a job out of it. Basically ppl or a job is the difference.

    Whilst the job needs non_autistic ppl it is quite conceivable that religious ppl (as not those employed by the religion) has a higher number who are non-NT. I don't buy it personally but employees aren't the only ones religious.

    I was once told that ASD diagnosis is like ADHD diagnosis in that you ideally need evidence of impairment throughout the life of the person. The old story you haven't got ADHD because you weren't diagnosed as a kid is often traipsed out. Not accurate because you can have ADHD go undiagnosed throughout childhood and into adulthood. I've read stories of retirees getting diagnosed.

    Is this true with aspergers and other ASD types?
  • crumbschiefcrumbschief Posts: 3,399
    Great programme and very honest of him,lot's of feeling and understanding of a different way of how some people can experience things that they can't turn off.
  • First.AspectFirst.Aspect Posts: 9,173
    earth wrote:
    I've always suspected a lot of religious people are far over on the autism/aspergers scale. I think it must be past experience of vicars and the likes with really odd accents and pronunciations.

    I can't imagine a more mutually exclusive grouping. You have utterly failed to understand. May God be with you.
  • pinnopinno Posts: 45,330
    My daughter was diagnosed with possibly Aspergers syndrome. She couldn't sit through the Griffith's test and it was suggested she had ADHD. So it wasn't confirmed but we know that she is somewhere on that spectrum - everything fits the description and all the professionals involved with her agree.
    To cut a long story short and with the help of the speech therapist and various people in the education service that pushing for a diagnosis when we knew what we needed to do as parents to assist her was and is probably a waste of time. What didn't we know at that point that we needed to? Nothing really.
    So we decided that we wouldn't push her through the Griffith's test and we would not seek medical intervention for the ADHD.
    Finally, the paediatric occupational therapist did some aptitude and attention tests with her. From the right angle; in other words, at school, in the morning where she is settled and will have the most focus. This confirmed our belief that she hasn't got ADHD as environmental and circumstantial triggers can affect her behaviour the POT was very good and 'Tricky' did well in a number of balance, logic and dexterity tests. There was nothing to suggest that she had ADHD.
    Now we have been referred to CAMS to help us deal with triggers that results in unruly or aggressive behaviour. It's almost always born out of frustration. If she is happy, she can be a star and display altruism and can anticipate need in a way few children of her age do.
    She's generally a very happy little girl and she is thriving in a well supported learning environment and learning at a rate that has surprised everybody. She is in a learning support group in the morning and main-stream school in the afternoon.
    People push for a hard written diagnosis often for applying for benefits. We don't get any financial assistance and do not want to go down that route.

    I cannot thank enough the various professionals that are and have been involved in her development thus far. As long as the structure is there to support her at school, she'll continue to do well but at the end of the day, it is our responsibility to do our utmost for our daughter at home, at weekends, during activities etc and provide the structure that she can colour in. The discipline is therefore in the parent, not the child.

    My brother on the other hand is Autistic and that's a completely different ball game. His main problem is a lack of social skills. The system (and my father) failed him in many respects but he is a lot older and things have changed fundamentally as regards to the attitudes towards people on the Autistic spectrum thankfully.
    seanoconn - gruagach craic!
  • robert88robert88 Posts: 2,696
    keef66 wrote:
    I saw the Rory Bremner one recently, and heard the Chris Packham one the night before last (I only saw snippets because I had my head in the fireplace grouting the new hearth). Thought provoking stuff, and kudos to them for talking about it so honestly. I got the impression that neither of them would be interested in being 'fixed', and recognised that their conditions had likely helped them in their respective careers. I got the feeling they both had developed coping mechanisms and seemed content with their lives. The Americans convinced Aspergers could be cured were particularly scary.

    With good reason, remembering Rosemary Kennedy, JFK's sister.
  • Pinno wrote:
    My daughter was diagnosed with possibly Aspergers syndrome. She couldn't sit through the Griffith's test and it was suggested she had ADHD. So it wasn't confirmed but we know that she is somewhere on that spectrum - everything fits the description and all the professionals involved with her agree.
    To cut a long story short and with the help of the speech therapist and various people in the education service that pushing for a diagnosis when we knew what we needed to do as parents to assist her was and is probably a waste of time. What didn't we know at that point that we needed to? Nothing really.
    So we decided that we wouldn't push her through the Griffith's test and we would not seek medical intervention for the ADHD.
    Finally, the paediatric occupational therapist did some aptitude and attention tests with her. From the right angle; in other words, at school, in the morning where she is settled and will have the most focus. This confirmed our belief that she hasn't got ADHD as environmental and circumstantial triggers can affect her behaviour the POT was very good and 'Tricky' did well in a number of balance, logic and dexterity tests. There was nothing to suggest that she had ADHD.
    Now we have been referred to CAMS to help us deal with triggers that results in unruly or aggressive behaviour. It's almost always born out of frustration. If she is happy, she can be a star and display altruism and can anticipate need in a way few children of her age do.
    She's generally a very happy little girl and she is thriving in a well supported learning environment and learning at a rate that has surprised everybody. She is in a learning support group in the morning and main-stream school in the afternoon.
    People push for a hard written diagnosis often for applying for benefits. We don't get any financial assistance and do not want to go down that route.

    I cannot thank enough the various professionals that are and have been involved in her development thus far. As long as the structure is there to support her at school, she'll continue to do well but at the end of the day, it is our responsibility to do our utmost for our daughter at home, at weekends, during activities etc and provide the structure that she can colour in. The discipline is therefore in the parent, not the child.

    My brother on the other hand is Autistic and that's a completely different ball game. His main problem is a lack of social skills. The system (and my father) failed him in many respects but he is a lot older and things have changed fundamentally as regards to the attitudes towards people on the Autistic spectrum thankfully.

    Pinno, from our experience I can't stress enough how helpful a written diagnosis has been in getting support for our daughter at school. We didn't get this until she was 15 and it some respects it came a little too late for her to totally maximise any potential academically but when it did it was like night and day in how the school (and subsequently college) were obliged to provide additional support.

    She coped really well at junior school and it only started unraveling at secondary school (an academy but that's a whole different topic) so whilst you feel everything is fine now and you are all coping well you'd be "future proofed" as it were.

    Sounds like you've got a great handle on things as parents but for 35/40 hours a week you'll be putting her into the hands of system which can be far less understanding or forgiving.

    You have my contact details if you want any further insight or help - fortunately our daughter isn't too far to the left/right? of the scale and I think each individual's circumstances (and therefore challenges) are unique but nothing better than the experience of those who are in a similar situation.
  • pinnopinno Posts: 45,330
    Pinno wrote:
    My...situation.

    I see where you are coming from and it may be that in the future (secondary school) we'll need a more concrete diagnosis.
    However, she is in the learning difficulties class at a local school where she gets almost 1:1 tuition and so far, it's working well.
    My concern is finding another school when we eventually move that's as diligent and puts as much work into her development as she's getting now.

    However, when my head stops spinning from general chaos, i'll PM you in time. Cheers.
    seanoconn - gruagach craic!
  • webboowebboo Posts: 4,260
    The discipline is in the parent not the child.
    That should be posted above every school and educational establishment entrance.
    Classic.
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